Fun Run

I found a 5k/2mile walk fundraiser for Migraine Research! I want to participate in at least one of these.

The Main Website is Here

I’m thinking about going to the Oct 7th one in Philly (2+ hours from the house) Here

But I’m also seeing there’s one in DC on Oct 15th, the weekend after Here

I can’t really run..  I’ll probably try to do the walks for each one. The price is about $30/$40 per person depending on which one I go to. (Or both! lmao) Of course DC will be the one that makes me feel more at home. There’s no way in hell I’m going to the one in West Virginia. Also want to go to take photos of each race.

Please let me have money/transportation by the time these things come up.

Happy Birthday To Me (FT. Koi CBD)

I bought it. Or at least some version of it. I know I originally wanted to try the Genesis CBD but when I had the money in my account to purchase, they were sold out :(. And I was going to order, THAT day, no exceptions. I wanted something that would ship in time to be a birthday present to myself.

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Here’s what it looks like.

I ordered the 500 mg. It tastes like warm vanilla smoke, but in a bad way. It’s hard to get down. I have to chase it with few large gulps of water. And then it still leaves a gross taste in my mouth.

At this point, I’m not 100% sure if it does anything. The first couple times I took it I got a little sleepy (or this might have been completely unrelated sleepiness; I’m always tired and working on correcting my sleep disorder.) I’m going to continue to take this and see what happens. I want to do a proper test on a few bad headache days and see if it gives any sort of relief or even distraction, and for how long. I’ll make up a little chart and everything.

How I usually dose it is about 2 droppers full in the morning, or whenever I begin my day. And then 1 to 2 (or even 3) as needed for extra pain throughout the day. Is it doing anything? Am I experiencing some sort of placebo effect? Find out next time on the next episode of DBZ…

(I started this post like 2 weeks ago when it actually was my birthday, but never got around to finishing/uploading until today).

The Lamictal

I’ve stopped taking my Lamictal. I didn’t feel like it was really doing anything for my snow and I don’t like the idea of being on a medication if I don’t really need it. I’ve gotten to that point where I want to just throw all my pills out the window and let my body suffer for the way it’s been treating me.

I probably should have talked to someone about it, considering I still don’t have a regular neurologist. But I just tapered down off of it the same way I started it. Half the dose for 2 weeks & continue until no more Lamictal.

I’m half tempted to just delete this blog because I’m so terrible about updating! I find this is a really handy way to keep track of my health nonsense for myself, but if I never update the thing, what’s the point? UGH maybe I’ll actually start using the mobil app so when I’m at work or out in the world somewhere, I can blog on the go, when things are fresh in my mind, and it’s not like I have to sit down at one time and force myself to type out something coherent.

Still Months Away from a Neurologist

When my neurologist left Johns Hopkins, I was distraught at the fact that I had to find a new one. I knew it would take time. And I’m usually a very patient person, but I’ve been without pain relief for too long now. But I scheduled a new patient appointment with another neurologist anyway and was determined to wait my 6months.

This month is January. My appointment was supposed to be February 1st, which was no problem! I could wait a month, that would be fine. I will just do my over the counter routine and it won’t be too bad because it’s only a month!

Surprise! They call to cancel my appointment. My doctor is now doing inpatient only that month, which is so not anyones fault and I don’t blame them, but I’m still upset. The earliest they could schedule me was June 1st. As in 6months from now JUNE 1ST! Now, THAT I don’t know how I’m going to make it to.

I do have an appointment with the Nurse Practitioner near the end of this month, but I’m not 100% sure what she can do for me? Can she prescribe me new medications? Can she recommend me for the nerve burning procedure? I just need SOMETHING that will work.

I’m going to make a list of everything I want her to cover with me and bring it so I won’t forget anything. So far that list looks like:

  • Botox?! is it worth/too expensive!!
  • Nerve Blocks work but are too temporary
  • Can she get me into the pain clinic for the nerve burning?
  • Stimulator trial?
  • plz just tell me to hang in there

Linda White, please don’t fail me now!

Tired

I am TIRED of being tired.

I feel just absolutely exhausted.

I am too tired to think beyond basic functioning. The other day I even took like a 3 hour nap when I got home from work. I guess it really doesn’t help that I’ve quit caffeine as well.

I am going to sleep. And sleep. And when I wake up I hope to be rested!

A Psychiatrist Came Through For Me

Friday’s withdraws were BAD. In the last hour of work, it got so much worse. And I was hidden underneath my desk, thinking how awful it would be if I ruined everyones day and went to the hospital.

When I finally got home, I broke down and ended up in the bathtub with all the lights out. I sort of consider it my little comfort place. I hadn’t been in the bath for more than one minute when my phone rings. It’s the psychiatrist I saw a few weeks ago with some info about pain specialists and biofeedback. And while I’ve got him on the phone, I tell him about this horrible withdraw situation I am in. He writes me a one month prescription and I pick it up from CVS. It was the simplest fix, and here I was thinking I was going to end up in the hospital. Sometimes it just amazes me how things like that can fall into place.

In the meantime, I’m only taking half the Cymbalta dose until I can get a new neurologist. I swear there’s nothing scarier than a sudden detox from a medication!

Suddenly Stopping Cymbalta

I am suddenly stopping Cymbalta, and it is not by choice. I went to the pharmacy to pick up my refill last night, but I left empty handed because my insurance won’t pay for it until the 12th. Somehow I don’t understand. She was telling me the instructions on the bottle stated I should be taking one pill a day. But I’ve always been taking 2/day since I last saw my neurologist. How did I not run out of pills in August then?

I have no idea. But from last night (Sept 6th) until the 12th I will have no Cymbalta to take. I have read all about this withdraw, including a lovely thing called Cymbalta Discontinuation Syndrome. I made it through an extremely difficult Effexor withdraw, but that was with tapering down. In this case, I’m going from the highest dose of Cymbalta, to zero within one day.

I am very conflicted. I like the idea of having to take a medication everyday to control my symptoms and prevent pain. But I have a fear of relying on medication every day as well. It comes from the days when my endometriosis was poorly controlled and I was taking birth control pills like candy. I would double up on pills (based on my doctors recommendation) for a short amount of time to try and prevent all the pain and blood. I would double up so much, that when it came time to get a refill from the pharmacy, it was too soon, and the insurance wouldn’t cover it. And I would cry when they denied me because I didn’t know what I was going to do. Letting the period come meant extreme pain, not eating, not sleeping, and hospital trips where I wasn’t even given anything for the pain. Those pills were the only thing stopping all that from happening, and I wasn’t able to get them when I needed them. And that sounds all too familiar right now. At least with birth control pills, there is no withdrawal symptoms. I am wishing future me luck with the next 6 days.

When I finally do get my Cymbalta back, I think I am going to half my dose anyway. Having no neurologist at the moment makes me free to make shitty decisions.

MIGRAINE AWARENESS MONTH

June is Migraine Awareness Month!!!! Here are some facts:

  • Migraine is the 6th most disabling illness in the world
  • More than 4 million people in the US have chronic daily migraine
  • 18% of American women experience migraines
  • More than half of all migraine sufferers are never diagnosed

 

Chronic Daily Migraine has really sidetracked my life; I never thought it would be like this. I see my neurologist more than my friends. I think a little more education and awareness is needed. Migraine is not “just a headache”, it is an actual neurological disease.

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Photos are of my actual brain MRI.

 

Diagnosis: ???????

I just came back from an appointment at the Johns Hopkins Wilmer Eye Institute. And I’m no closer to an answer than I was going in there. How many doctors have I seen so far…

  • Dr Stanley Shocket (retina specialist)
  • Dr Vivian Rismondo (neuro-ophthalmologist)
  • Dr Janet Sunness (The Hoover Low Vision and Blindness Center)
  • Dr Meyerlee (Wilmer Eye Institute)
  • Dr Daniel Gold (neuro-ophthalmologist)
  • Dr Amde Selassie Shifera (Uveitis Clinic)

I am just physically and emotionally exhausted.

I am tired of getting my hopes up for nothing. And I just feel so hopeless every time I am told that my eyes are normal. My brain is normal. Everything is so normal. Then why can’t I see? Why do I have this visual snow and blind spots? What am I going to do the day that the blind spots completely take over my vision??

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Look at my cool fluorescein angiogram. What a healthy eye 😐

My first doctor said it looks like there is decreased blood flow in this photo (the bottom part) but the second one I saw told me this is normal. I don’t know what to do now.

Rare Disease Day 2016

Rare disease day is February 29th 2016! I just recently found out that one of my diseases is considered rare.


Visual Snow Syndrome aka Persisting Perception Disorder – the persisting visual symptom of seeing snow or television-like static across the visual field, constantly, in all light conditions. It comes with a whole major list of symptoms, including visual disturbances (seeing trails, afterimages, floaters, halos etc.), tinnitus, fatigue, depersonalization and derealization, and brain fog. 

No treatment.

No cure.

Very little research. Most doctors don’t even realize that it is it’s own condition, and will diagnose it as a symptom of migraine. 

Spread the awareness! Tell your story.

http://www.rarediseaseday.org/

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